Blogging my experiences living life with mast cell disease. Sharing how my husband (Nick), service dog (Leni), pet dog (Bonk), and I find ways to enjoy life even with a rare disease and trust God even when things feel out of control.

Pages

Thursday, August 11, 2016

Reasons Why Having a Feeding Tube is Good

My last post was about why it is important to me to raise awareness for Digestive Tract Paralysis (DTP). Sometimes awareness posts can be sobering or have a certain tone to them because we are trying to communicate the importance of getting the word out about chronic, life changing conditions. Not always a fun things to write about or read about.

So that's what this post is about! Fun, that is =)

If you didn't read the last post, you can read it here. This post is going off a bit of what I wrote there. I talked about why I'm thankful for my feeding tube (Herman) even though it was not anything I ever wanted. This post, though, is going to go one step further...get ready!

The title kinda gives it away, but believe it or not, there are actually things I like about Herman. Not just that I'm thankful for him, but actual things that are perks of having a feeding tube. I know, crazy right? Keep reading to find out why it can be cool to have a feeding tube =P

I get more to accessorize!

So I'm sure anyone with daughters knows how important accessories are. Glasses (even if their eyesight is perfect), hair ties/barrettes/bows, bracelets, necklaces, etc. Now I was never super girly, so other than my glasses (that I had for actual vision issues) accessories were not a priority. Until about a year and a half ago...One thing that happens when a feeding tube is placed, is that you get a hole poked somewhere in your abdomen. For me, mine leads into my stomach. I have bumpers on the inside and outside holding my tube in place. The external bumper is rubber and if you imagine what it feels like to have rubber rubbing on your skin 24/7, you get an idea of what having Herman can feel like. To prevent irritation of the skin around the stoma (hole that the tube goes in), something has to be put in between the bumper and the skin. Thankfully, someone with crafting ability (i.e. NOT me =P) came up with the idea that fabric pads are WAY cuter than plain split gauze. That means that every day, I get the choice of almost 20 tube pads, each with a different design. Olympic soccer team playing New Zealand...soccer tube pad! Indians going for their 14th straight win...baseball tube pad! Seeing a new doctor...zebra tube pad! Holiday...there's a tube pad for that! See how this can be fun?? I get to choose a new pad every day that fits in with what is going on in my life that day. How is that not a perk?

No more tasting nasty medications!

Ever have to take a medication and the very taste of it is almost worse than the reason your taking it? Nyquil, I'm talking about you...Have no fear, Herman is here! Thanks to having tube access to both my stomach and intestines, I no longer have to taste my medications but can just put them down my tube. When I first was prescribed my nausea med in liquid form, my pharmacist was warning me about how bad it tastes and that most people have to chase it with gatorade or something just to tolerate it (which seems counter-productive if you're nauseas...). I was happy to inform him that wouldn't be a problem for me since I had Herman. #feedingtubeforthewin And just in case you were wondering, I have since confirmed that yes, my nausea medication is that bad...

Never not having enough space to carry what you need!

How many times have you gotten ready to go somewhere and realized you were bringing just enough that it wouldn't fit in your pockets? Not quite enough to warrant an actual bag, but too much to just slip in a couple pockets. Not the case with Herman! Thanks to continuous feeds, I'm never without my backpack containing my formula and pump (and emergency medications, medical information, glucose meter, emergency sugar, EpiPens, you get the picture...). Get a bunch of papers at the doctor and don't know what to do with them? No problem! Don't know what to do with your wallet and phone when you have no pockets? I've got you covered! Yes, it does get old sometimes to always have a bag with me, but just think of all the things I can bring =)

No more throwing up!

Okay, full disclosure, I do still throw up, but it's WAY less than it used to be. Having access to my stomach means that when I'm super nauseas, sometimes I can vent out whatever is in my stomach. Basically that means that I open the port the leads my stomach and either let it drain out on its own or use a syringe to help suction out the contents. Why is this a good thing? When you throw up a lot, there is a risk of damage to the esophagus and mouth/teeth/etc. from the stomach acid that is repeatedly being forced out. Just think back to high school chemistry and learning about acids and their corrosive ability...yep, same stuff in our bodies. Now, this won't cause major damage with the occasional flu or every now and again vomiting episodes, but when it becomes a regularly scheduled event on your weekly agenda...that's when damage can occur. Thanks to Herman, though, I can often avoid actually throwing up by "throwing up" out my feeding tube. No, this is not one of the more glamorous parts of having a feeding tube...sometimes the contents of my stomach are so rancid that just the smell of draining it out makes me even more nauseas (sorry if that's TMI, but this is real life people =P). BUT, it still helps keep me from actually vomiting it back up by relieving some of the pressure through allowing it to come out of my tube. Fun? Not particularly...but a perk of having a feeding tube for sure.

When I do ab work, I feel hard core!

Seriously, if you've ever had abdominal surgery, you know that there are seriously A LOT of muscles in your stomach region...and you use them FOR EVERYTHING. Driving, every time you have to switch from the gas to the break. Laughing, major ab workout. Turning to see who walked up behind you, getting out of bed, going to the bathroom, you get the picture...For weeks after having Herman placed, any tensing of my stomach muscles caused pain at first, then tapered to discomfort. Eventually, it got to the point where I don't even feel it. And then I started doing ab work again...Oh man...Basically when you get a feeding tube, YOU GET A HOLE IN YOUR STOMACH....literally. Some of the muscles now have a tube in the middle...so they are not connected to their other half. That means the muscles above and below the tube have to work harder to maintain the integrity of the abdominal muscles. Just imagine you're on a suspension bridge and there is a hole...you better hope the ropes on the sides are strong enough to compensate for the missing pieces. Okay, maybe not the best example, but hopefully you get the picture. I was so proud of my core strength before getting my feeding tube, and I felt that it was gone after surgery. But after it healed completely, I was able to get back to ab work. Now I feel hard core because I can still do planks and core work even with a hole in my stomach!

I hope you enjoyed reading a bit about what I consider #feedingtubeperks. Don't get me wrong, I am by no means promoting feeding tubes...TRUST ME! No feeding tube will forever trump having Herman, even with all these so-called "perks." I wrote this post as a joke =P I mean, seriously, good things about living with a feeding tube?? So yes, I'm joking when I say #feedingtubeperks...being tube free will ALWAYS be better. But my reality is that Herman is a fixture in my life right now. And I have many friends who are also living, surviving, and thriving with feeding tubes.

A couple of days ago I wrote about Digestive Tract Paralysis. To put it bluntly, living with any form of GI motility issues STINKS! Both literally and figuratively...Just like the rest of my life with mast cell disease wasn't a choice, neither is this...But just like I get to choose how I react to my mast cell disease, I get to choose how I'm going to live with Herman. No, I never would have chosen this road for myself, but I'm here now. So instead of hiding my tube and being ashamed that my body doesn't work "normally," I'm going to find the good...whatever that may look like.

Herman wasn't my choice. BUT, Joy is a choice. Smiling every day is a choice. Finding good in everything is a choice. And I'm choosing to embrace whatever #feedingtubeperks I can while Herman and I continue our relationship for the foreseeable future.

So yes, I may eat differently than you do...but do you have cool accessories on your stomach coordinated to every holiday, event, favorite color, animal, etc.??? Didn't think so =P